Is Your MS Bothering You Today?
Have you ever heard the sentence, “Is your MS bothering you today?” or something to that extent? It seems to happen to me with people that I don’t see all that often, or aren’t as ‘educated’ about the disease. But it tends to bother me at times. Mainly when people ask me things like this, that I’ve told multiple times the workings of Multiple Sclerosis.
I understand that not everyone wants to ‘hear’ about MS, and I can understand that. But don’t try and ask me about MS, and to take the time to really educate you so you can understand better, when you aren’t even listening. Because if you were even listening, you would know that my MS bothers me EVERYDAY. It just depends on the severity of it.
For instance, this past week I’ve been doing yard work/landscaping in my front yard with my husband and kids. Not a big deal, right? Well it is when it’s HOT outside… and I’m not talking about like mild hot, I’m talking like the other morning my phone app said it as 76 Fahrenheit outside at 9am, with a heat index of 90… because we had high humidity (82%). I was outside working on the yard and I had to stop because I could tell I was over doing it.
So that was a few days in a row that I was working on the yard, and every night I’ve been going to bed early, and sleeping for a long time. I even couldn’t remember going to bed, because I was so tired. So in general, the heat makes me worse. I’m more fatigued, I am just in pain, and my back is in a constant spasm… my foot is dragging a little bit, etc.
But the thing is, I don’t just deal with this when I over do, or it’s too hot out. I can have increased symptoms by plenty of other reasons, or just because… no other reason needed.
The moral of my point… MS does NOT go away. If our MS went “away” that would mean there was a cure, which we currently do NOT have. I have probably written about this before, but I can’t even remember because guess what? My memory is complete crap at the moment, and I literally can’t remember anything. I’ve literally been telling them that my brain is fired and/or “out-of-order” or what I have termed as Cog-Fog.
I’ve come to realize that not just for me, but also for many others with MS or other invisible illnesses, etc. that we can be very sensitive to how things are phrased. It’s not because we are mean, or just rude, it’s because we have been put through so much, that just certain words can put our ‘guard’ up, or it does for me at least.
So if we are snippy about it, don’t take it personal… if you are one of those people that ask us questions about how we are doing, and really mean it. Sadly, there are people out there that will put us down, or make us feel like crap about being diagnosed with MS, when we really had no control over it. We already go through so much, which it’s sad that there are people out there who actually make it worse for use, but it’s true. However, I fully believe in Karma… so I try and calm myself down and not ‘react’ to people who are rude or uncaring.
Now there are people out there that have MS, and don’t have deal with symptoms on a daily basis, and that’s really good for them. Those of us who you would probably ask about their MS, because it’s more noticeable or bothersome, we can’t control it. Yes, we do try. Who wants to live with the symptoms that are caused by MS? No one. I’ve done vitamins, massage, chiropractor, meds, stretching, Physical Therapy, Exercise, Diet, and the list goes on and on… and I do feel better than what I did initially, but it’s not GONE.
Bottom line, as of right now, this is a life long illness for many others, and myself until a CURE happens to those of us living with MS. Now remember as I have stated in a previous article “Calling Y’all Out”, what my definition of a “CURE” is, which I call the “C” word.
“Ashley’s Definition of a CURE for Multiple Sclerosis: A medication and/or technique/procedure that stops any future demyelination to a patients Central Nervous System to happen EVER again. BUT this certain medication and/or technique/procedure ALSO correct any and all damage done to patients Central Nervous System due to Multiple Sclerosis.”
I also love the saying, “Looking forward to the day when MS stands for Mystery Solved” (I even have it on a T-Shirt)
Now, I’m not sitting here trying to be negative or anything, but I’m just being realistic. But also remember that what I personally go through with my Multiple Sclerosis isn’t what everyone else goes through. It can be better for some, and it can be worse for others, sadly.
I think a lot of people that really ‘know’ me, already know that since it’s starting to heat up in Central Texas, I’m not going to be out doing as much… especially things that involve outdoor activities. Not because I don’t want to, but because I can’t. I try to do as much as I can, believe me. I’m stubborn and don’t like being held back when it comes to things I want to do. But with the heat, comes overheating, and with overheating, comes fatigue… then possibly pain. So I try and not start that cycle up.
Oh! I was recently in Indianapolis, IN for the 2015 CMSC Annual Meeting covering the conference for MSWorld’s Conference Coverage. Which you might have heard about this meeting from Cathy Chester, “Hope and Collaboration: A Preview Of What I’ll Be Writing About As A Blogger For CMSC’s Annual Event”
Myself, Christie Germans & Cathy Chester all posed for a ‘selfie’ as well, which you can see by visiting Cathy’s article. I also ran into Laura Kolaczkowski at the Conference as well! Needless to say, there were a lot of MS Patient Bloggers there, and it was refreshing to see so many familiar faces.
I totally just got side tracked, but what else is new? What is my main point of all of this?? YOU ARE NOT ALONE. There are many people out there who feel the same way as you – or go through the same situations or even confrontations that you do. Unfortunately, there are still people out there who are close minded, and don’t want to see and/or hear what’s really going on. We can’t FORCE education on these naïve people, even though we want to, it would be a waste of time, trust me on that.
But there are people out there that want to learn more, that want to hear what MS is all about, and want to know what is REALLY going on with us, not just an “I’m Fine”.
So cheer up buttercup! You aren’t alone in your fight and your feelings. It is frustrating… but this is something that we must move forward from so we can enjoy life. Are we always going to be upbeat and positive? No, absolutely not. We will have our bad days, because those of us that are affected my the symptoms that MS causes on a daily basis… there are ‘good days’, even though we still experience symptoms, they are just tolerable at that time, or maybe we have built up a tolerance to them? Who knows?
“You are so brave and quiet I forget you are suffering.” – Ernest Hemingway
How well do people around you understand MS?